By Erica Verrillo
Last January, ProHealth named Jennifer Brea as its Advocate of the Year for her exemplary work in creating the film, Canary in a Coal Mine, as well as for her inspiring commitment to the ME/CFS community.
Jennifer Brea contracted ME in 2011, when she was suddenly hit with a flu-like illness. A little over a year later, she became bedridden – just a few months before her wedding.
At the time, Jennifer was enrolled as a PhD candidate in Harvard University’s Department of Government. She was also pursuing a Master’s degree in statistics. Before beginning her doctoral program, Jennifer had worked as a freelance journalist covering China and East Africa for the Guardian, the Scotsman, the Africa Report, China Daily, and Ebony Magazine.
It was her background in journalism that led Jennifer to the idea of making a full-length documentary about ME/CFS. To drive home the impact of the illness, Jennifer wanted to feature the stories of patients as well as the clinicians who have spent years treating those patients and attempting to unravel the puzzle of ME/CFS.
Last fall the project garnered over $200,000 in an outpouring of support from the ME/CFS community. In November, Canary in a Coal Mine won Indiewire’s Project of the Month , which earned her a creative consultation with the Tribeca Film Institute, one of the industry’s most prestigious funders of innovative film projects. In July, Canary in a Coal Mine was chosen as a Sundance Institute Documentary Film Program grantee. It was one of 44 projects selected from over 600 applications from 69 countries around the world.
Jennifer was kind enough to answer some questions about her experiences making the film, and about her battle with ME/CFS.
An Interview with Jennifer Brea
1) After falling ill, when did you suspect you had ME/CFS? Had you already known about the illness? How were you diagnosed?
I first suspected I had Chronic Fatigue Syndrome in spring of 2011, three months after the acute onset of my illness. I had never heard of it before, but it sounded like something you get if you are stressed at work or lead a busy life. I think I must have deduced from the name and the symptoms that I’d either simply get over it or that it might be a drag, but that I’d take some vitamins and more or less go on with my life. Given that horrid name and the complete lack of public (or medical) education on the illness, what else was I to think? It was a busy year, and so I just kept on going.
I was classic Fukuda, minus lymph nodes. I had recurrent sore throats, fatigue, weakness. And I was extremely dizzy. I told my doctor I thought there was something wrong with my immune system. He told me that if there was, I would have had that immune dysfunction since I was a child. He also told me that there was a lot overlap between Chronic Fatigue Syndrome and depression.
Around my one year anniversary, I went to the ER with stroke-like symptoms. The illness had become something entirely different. I began having bizarre, transient neurological episodes. I was now classic International Consensus Criteria (ICC) ME. Gone were my “fatigue” and my sore throats. Arrived was tachycardia, perverse metabolic collapse in the face of minor exertion, sound sensitivity, ataxia, agraphia and expressive aphasia (it wasn’t that I had a hard time finding a word – I was incapable of verbal thought). That’s when I found the ICC online. It detailed all of my symptoms. The only other disease that came close was MELAS (Mitochondrial encephalomyopathy , lactic acidosis , and stroke -like episodes). I brought the Journal of Family Medicine article in to a half dozen doctors and no one had any idea what to make of it. One doctor actually threw it on the floor. Another diagnosed me with a somatoform disorder. After ruling out nearly every known infectious disease and a battery of normal (or mildly, sub-clinically abnormal) test results, I was finally diagnosed in summer of 2012 in Miami by Irma Rey. And of course, her and Nancy Klimas’s tests showed profound immunological dysfunction.
2) What aspect of the illness have you found to be the most difficult to cope with? How have you managed to deal with it?
The most difficult aspect of this illness was the loss of identity. I went from being a Ph.D student at Harvard, a writer, a student of statistics to a person for whom writing a three-sentence email was enough trigger a cascade of inflammation in my brain that might take days to recover from. If I could not read, and I could not write, and I could not think, then who was I? Was I still the same person? Would I have the same worth? You have to understand that before my diagnosis, I thought I might be dying, and if I wasn’t dying, I thought it was entirely possible that one of my many, almost daily episodes of expressive aphasia or absence might become a permanent state. That I might disappear and never come back.
I dealt with it by taking on the most insane and ambitious project of my life. Perhaps that’s the gift of having nothing left to lose!
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3) When did you first have the idea to make a film? What inspired you?
At first, it was a matter of survival. The second year of my illness, I was bedridden for five months. Then, I had three months of near-remission. I could take showers, go for mile-long walks, make dinner, cross state lines. Sometimes I was even well enough to dance in our living room for no reason–how I miss that! I thought I had cracked the code and achieved escape velocity.
When the collapse came, I had to see this for what it was: a long battle with an uncertain outcome. It was such a blow that for two months I completely cut off contact with the outside world. I knew I was slipping into a depression. I think I must have felt I had only two choices: I could curl up in a ball and die, or I could make something.
The film idea came from a number of places. First, when I was unable to really read or write, I started shooting a few video diaries as a sort of therapy. I’d also started filming my symptoms so I could take them to doctors’ appointments. The more experiences I had with doctors, and the more I learned of other patients’ experiences, the more I came to be of the mind that one of the biggest challenges to greater acceptance of this illness is that we don’t do a very good job of performing sick. Either we are well enough to leave our houses and look more or less normal, or we’re not. And if we’re not, whether we are permanently home or bed-bound, or just having a bad day, you’ll never see us at our worst.
Fortunately, film does not suffer from those limitations. A camera can be anywhere it needs to be. It can be there for the best and worst moments. It can reveal a kind of existence that I think would be hard to believe unless you see it with your own eyes.
4) Journalists have quoted you as saying that this film is an “uprising from our beds.” What do you intend to do with your film once it is finished?
Ha! That’s actually a quote from Anna Kerr, a patient from Australia. But it’s my favorite quote from the entire campaign.
I have hopes for a festival run and wide distribution. Beyond that, I want to cultivate around the film a space for storytelling and activism, of which the Kickstarter campaign was just an appetizer. I want to build bridges to other illness communities, and I plan to use the Advocate of the Year Award to seed a new project that will be a minor downpayment on that. If we can make a big splash with the premiere and festival run, I hope to use that moment to engage with leaders in medicine and policymakers to make progress on two of our most important goals: medical education and public funding.
All of that is important, but hardly revolutionary. I think the feeling of uprising during the Kickstarter campaign was about liberation by self-definition. It was thousands of patients saying, I can choose the name I want to call my illness without approval by government fiat. I know what my experience of this illness is, even if it’s not reflected in any official case definition. I know what the history of this illness is, even if the media never reports it. And I can take it upon myself to educate others and make the world a little more sane, even if the institutions that are meant to serve us continue to perpetuate thirty years of insanity. That, I think, was what the uprising was and will be about.
Which is not to say that transforming medicine and the politics of this illness is not crucial. Rather, it’s important to remember that they are not the only spheres.
5) The name “chronic fatigue syndrome” is generally considered pejorative by the ME/CFS community. If HHS gave you the power to change the name to anything you would like, today, what name would you choose?
Gosh. Myalgic Encephalomyelitis (ME) is probably the name I would choose. It’s not perfect, but it describes at least my presentation of the disease pretty well. It’s a name that connects it to its pre-Incline Village history. It’s Latin, so it sounds suitably intimidating.
If I were going for something a little more modern, I might choose Acquired mitochondrial and immune deficiency syndrome (AMIDS).
Any name with the word fatigue would be out. Can we please have a funeral for fatigue?
Note: You can stay up to date on the progress of Canary in a Coal Mine here .
Erica Verrillo is ProHealth’s expert editor for the ME/CFS HealthWatch and Natural Wellness newsletters. She is the author of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, available as an electronic book on Amazon ,Barnes & Noble , Kobo  and Payhip  (PDF file). Her website,CFSTreatmentGuide.com , provides practical resources for patients with ME/CFS. She also writes a blog, Onward Through the Fog , with up-to-date news and information about the illness, as well as the full text of CFS: A Treatment Guide, 1st Edition (available in translation).